May 12: A Disease Gets Its Day, but Who Cares?

May 12 is not a day that is written into history. It is not a day when there will be, like clockwork, a presidential proclamation, or a moment of silence. Yet, for some, it is a day of recurring infamy.

Since 1992, it has been the day on which Myalgic Encephalomyelitis (ME) sufferers — and those who care for them– have marked the disease. It is, for these people, a day of sorrow, of remembrance and of yearning. They remember those who have died, or committed suicide.

They are angry — often too angry to be persuasive — that ME is not on the national radar. They are angry that after more than three decades, the federal government is still seeking to define the disease, which afflicts about 1 million people here and 17 million worldwide; that research funding, at $5 million, is so low that in the world of Washington expenditures, you practically need an electron microscope to find it; and that the suffering goes on unmitigated.

They are angry that the government, through the Centers for Disease Control, abandoned the old name, Myalgic Encephalomyelitis, in favor of the dismissive new name, Chronic Fatigue Syndrome. They believe this trivializes the disease, and favors those who want to define it as a psychological affliction rather than a real disease.

They are angry that distinguished researchers, like the virus hunter Dr. Ian Lipkin of the Columbia University Medical Center, has had to resort to crowdfunding to continue his work that might help ME patients.

Why does the ME community observe May 12? It is the birthday of Florence Nightingale, who may have suffered at the end of her life from a variant of ME.

So this May 12, Mary Dimmock, a mother of a suffering son, will endeavor to unfurl a banner made of pillowcases on the grass outside the U.S. Capitol. Her goal: Get recognition for the disease, so the long work of finding answers and a cure can be accelerated.

What is known is that ME is a disease of the immune system, and it starts with flu-like symptoms or with collapse after exercise. In extreme cases, as with Dimmock's 26-year-old son, Matt, the patient becomes almost totally incapacitated with mental fog, painful joints, terrible headaches, intestinal upset, and extreme sensitivity to sound and light. Matt Dimmock has to spend his days on a bed set up in a closet.

Patients go through periods of extreme debilitation for two or more years, sometimes recovering enough to function for several hours a day. What a healthy person would consider to be normal activity — like going to dinner or a movie with friends — can result in two days in bed for a ME patient.

Doctors, on the whole, know very little about the disease.

Mary Dimmock is an unlikely protester. She has presence: tall and distinguished. She is a scientist, who took early retirement from a large drug company to care for her son and has become an advocate for this disease, which has confiscated so many lives.

Although ME knows no age or gender, the National Institutes of Health (NIH) has lodged what little effort it makes under “women's health.” One patient said, “Maybe they think we are hysterical women, who are just making a fuss.”

Dimmock is the antithesis of an hysterical woman. She became an activist when she found, after her son fell ill four years ago, that where ME is concerned, the system is broken. She told me, “It has been profoundly disturbing to watch the world around my son, especially the medical community, ridicule and even brutalize him for believing that his disease is real and serious.”

Around the world, the ME story is the same: Doctors who do not know anything about the disease and governments that do not want to know anything about it, or want to believe, for economic reasons, that it is a psychosomatic affliction, when there is ample evidence that it is an immune system disease.

I have interviewed many patients, and some of the small coterie of doctors who are working on the disease. They all wish the Department of Health and Human Services would take a proactive role through its agencies, the NIH and the CDC. More and more dedicated researchers have been forced to turn to crowdfunding because the agencies of government, charged with the public health, have turned out to be selective in their sense of who is sick. — For the Hearst-New York Times Syndicate

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Please, folks, join in one of these two demonstrations, if you can.
Two demonstrations on May 12th

May 12th Demonstration at HHS Headquarters in San Francisco
On Monday, May 12, 2014, from noon -1 PM, there will be a gathering at the Federal Building located at 90 Seventh Street in San Francisco. This is a special May 12th for people with ME/CFS. It marks the 30-year anniversary of the Incline Village outbreak that brought the disease onto the world stage, and dubbed it with the name "chronic fatigue syndrome." Over the last 30 years, the illness has affected more than a million people in the U.S. We have seen progress in research, but HHS has done nothing to promote further understanding of the disease, or to halt its spread.
The theme of this event is "30 Years of Neglect." To drive home the point that ME/CFS is a serious disease that not only disables, but can be fatal, we will be displaying pictures of people who have died of ME/CFS in empty wheelchairs. We will read their obituaries. Afterwards, we will go to McKesson Plaza, 5 blocks away, to take our message to Senator Dianne Feinstein.
This will be a peaceful demonstration (we have a permit).
Please join us! Friends, family and supporters are welcome!
For more information, please contact Erica Verrillo at everrilllo "at" yahoo.com.
ANOTHER DEMONSTRATION
Capitol Building, Washington, D.C.
Every year, the ME community holds a day of awareness on May 12th to highlight the plight of patients with ME and also FM, GWI and MCS. This May 12th is especially important to the ME community because this is the thirtieth anniversary of the ME outbreaks in Incline Village and Lyndonville. Thirty years of bad definitions, bad medical education and virtually no research funding. Thirty years of neglect in which ME experts have been ignored and ME patients have been abandoned. This must stop!
Our representatives in Washington need to hear from us. There will be a demonstration on May 12, 2014 in Washington, D.C. from 12:00 to 1:30 PM. The demonstration will be on the east side of the Capitol Building off of First Street NE. (Map here).
Posters and banners will be provided which highlight the lack of funding, the call by experts to adopt the CCC and the devastation and death that ME can cause. For those who plan on also visiting their legislative leaders, a fact sheet will be provided.
The federal government needs to see that we care! If you are in the Washington Area, please join us!
But if you can't make it to Washington, you can still participate by contacting your legislative leaders. Additional information along with a sample letter will be provided shortly.
Please contact Mary Dimmock at MECFSAction "at" yahoo.com if you are able to attend so that she can finalize plans.

Please, folks, join in one of these two demonstrations, if you can.
Two demonstrations on May 12th

May 12th Demonstration at HHS Headquarters in San Francisco
On Monday, May 12, 2014, from noon -1 PM, there will be a gathering at the Federal Building located at 90 Seventh Street in San Francisco. This is a special May 12th for people with ME/CFS. It marks the 30-year anniversary of the Incline Village outbreak that brought the disease onto the world stage, and dubbed it with the name "chronic fatigue syndrome." Over the last 30 years, the illness has affected more than a million people in the U.S. We have seen progress in research, but HHS has done nothing to promote further understanding of the disease, or to halt its spread.
The theme of this event is "30 Years of Neglect." To drive home the point that ME/CFS is a serious disease that not only disables, but can be fatal, we will be displaying pictures of people who have died of ME/CFS in empty wheelchairs. We will read their obituaries. Afterwards, we will go to McKesson Plaza, 5 blocks away, to take our message to Senator Dianne Feinstein.
This will be a peaceful demonstration (we have a permit).
Please join us! Friends, family and supporters are welcome!
For more information, please contact Erica Verrillo at everrilllo "at" yahoo.com.
ANOTHER DEMONSTRATION
Capitol Building, Washington, D.C.
Every year, the ME community holds a day of awareness on May 12th to highlight the plight of patients with ME and also FM, GWI and MCS. This May 12th is especially important to the ME community because this is the thirtieth anniversary of the ME outbreaks in Incline Village and Lyndonville. Thirty years of bad definitions, bad medical education and virtually no research funding. Thirty years of neglect in which ME experts have been ignored and ME patients have been abandoned. This must stop!
Our representatives in Washington need to hear from us. There will be a demonstration on May 12, 2014 in Washington, D.C. from 12:00 to 1:30 PM. The demonstration will be on the east side of the Capitol Building off of First Street NE. (Map here).
Posters and banners will be provided which highlight the lack of funding, the call by experts to adopt the CCC and the devastation and death that ME can cause. For those who plan on also visiting their legislative leaders, a fact sheet will be provided.
The federal government needs to see that we care! If you are in the Washington Area, please join us!
But if you can't make it to Washington, you can still participate by contacting your legislative leaders. Additional information along with a sample letter will be provided shortly.
Please contact Mary Dimmock at MECFSAction "at" yahoo.com if you are able to attend so that she can finalize plans.

My wife has been unable to work at all for the last 7 years. A weekend trip to KCK to help with a new CONvention has knocked her down for 2 full weeks. She is just now able to tackle the simple chores, like the dishes. Normal person: 20 minutes. My wife: 3 or 4 minutes at a time, spread out over 3 hours.
THIS DISEASE IS NO JOKE! It will make a badass whine for his mommy. Get the word out! These people are in a living, breathing HELL!
thank you for trying to raise awareness.

It is so good to read an article that portrays ME, and the failures around it, so clearly. I am currently doing a Ph.D. on the conflicting paradigms of ME, and how the psychiatric paradigm gains its influence.
It seems that any company, or government agency, concerned with deciding disability payments, has an interest in labelling ME psychiatric, because it saves them money. But it gets worse, because the psychiatric model encourages treatment by Cognitive Behaviour Therapy, to convince people that they don't have a physical illness, and Graded Exercise Exercise Therapy – which makes patients worse. It can't make economic sense to make people undertake, as a treatment, something which is known to make people worse. ME is dramatically disabling at the start, but it can get better, over time, provided the patient is allowed to rest – to conserve the energy the body needs to fight off whatever is causing the multi-system illness. What advantage is to be gained by taking people who have a chance of gradually improving, and forcing them into being permanently bed-ridden and in pain. Telling people that there only source of income depends on their undertaking such treatments is …well, what would you call it?

It is so good to read an article that portrays ME, and the failures around it, so clearly. I am currently doing a Ph.D. on the conflicting paradigms of ME, and how the psychiatric paradigm gains its influence.
It seems that any company, or government agency, concerned with deciding disability payments, has an interest in labelling ME psychiatric, because it saves them money. But it gets worse, because the psychiatric model encourages treatment by Cognitive Behaviour Therapy, to convince people that they don't have a physical illness, and Graded Exercise Exercise Therapy – which makes patients worse. It can't make economic sense to make people undertake, as a treatment, something which is known to make people worse. ME is dramatically disabling at the start, but it can get better, over time, provided the patient is allowed to rest – to conserve the energy the body needs to fight off whatever is causing the multi-system illness. What advantage is to be gained by taking people who have a chance of gradually improving, and forcing them into being permanently bed-ridden and in pain. Telling people that there only source of income depends on their undertaking such treatments is …well, what would you call it?

Thank you for continuing to recognize this problem. My cousin Matt has potential for greatness. Before the onset of his illness, he was on track to have a productive fulfilling life, and he had the world at his fingertips. He is kind, smart, adventurous, and courageous, but ME is undermining his resilience. We desperately need the support of NIH, CDC, and the medical community to help him and his one million peers in this country to recover from this horrible disease.

It amazes me that the government will spend endless millions researching automotive recalls after a handful of drivers have been victims but can't come up with a good reason to fund this ME research. If millions of Americans suffer from ME it is our duty to fund the research and find a cure. It seems to me that it doesn't happen because the funding isn't media mania information. DO THE RIGHT THING!

Thank you as always, Llewellyn, for your most accurate reported account of the ME/CFS situation. We so much appreciate your efforts to help us in advocacy–as we try to get the government to be serious about the scientific biological realities of ME/CFS–having irresponsibly and neglectfully buried those of us in the disease over the last 30 years–all the while the disease of ME/CFS spreads.
Just think–had the HHS done their due duty and acted on their responsibility EVER — we may not be in the health crisis that we are today with ME/CFS–as it continues to spread to a person near and dear to you, and you, and on it goes.
Mary Dimmock, I am so sorry that your dear young son is suffering with this horrid life-stealing disease of ME/CFS, along with millions of us world-wide. It is hard to bear what this disease does to our lives–and ever more so tragic for the young. Kudos to you with taking your/our message to Washington, D.C.–unfurling those important words on the backdrop of pillowcases–how appropriate–as we are often, for the most part, housebound, couch bound and/or bed bound in our 'lives.' There is NO meaningful treatment for us persons with ME/CFS. We have been utterly DISregarded and abused by health care and the involvement/influence of insurance companies.
I appreciate your comments above, Nancy Blake. . . . well, what would you call it? Criminal–ABSOLUTELY criminal–a crime against humanity. That is what so many of us would call this.
We are fighting for our very lives and for the lives of generations to come!! Let our many voices be heard. Someone has got to listen; someone has got to help us in this travesty of being buried in the serious biological disease of ME/CFS.

It's hard to read this article without crying. I have suffered with ME since 1998. It has taken every bit of life and joy I had. It is truly mind-boggling that this horrific disease is ignored, and that such profound suffering is dismissed and hidden away. All I have the strength to say is that I am heartbroken and appalled. Because, as the article is titled, "who cares"?

Blessings to all who srffer from ME . I have 2 dear friends who suffer from this debilitating disease. I am a Registered Nurse, and have seen what ME has done to the lives of patients and my friends. Time to pull up the carpet and stop sweeping the reality that ME is very real; it destroys lives and relationships because it has been labeled a "Psychiatric Issue". Thank you for this posting.

Blessings to all who suffer from ME . I have 2 dear friends who suffer from this debilitating disease. I am a Registered Nurse, and have seen what ME has done to the lives of patients and my friends. Time to pull up the carpet and stop sweeping the reality that ME is very real; it destroys lives and relationships because it has been labeled a "Psychiatric Issue". Thank you for this posting.

Thank You for helping to get the word about this disease and the disservice the gov't health service has done to future research and treatment on the disease. I have CFS/ME and I have had to be my own health professional for diagnosing the disease and researcher for what works.

Big thanks for this article. I am a mother of a daughter suffering ME. She has had the illness since oct. 2011, but we have known for it for about 1 month now. The ignorance and aggressivity towards us from the health professionals are beyond words. I will do everything I can, that this will change here in Finland.

There is even less evidence to support psychosomatic illness than ME. Yet, when all other tests come back negative even mental health assessment, and doctors are faced with medical uncertainty, they still err on the side of "all in your head" diagnoses. Since "in your head" diagnoses contribute to an average 7 year diagnostic delay for rare illness patients, which encompass roughly 30 million Americans, and the large ME community multiplied by friends and family who are tired of seeing their loved one suffer… I would say the majority of the US "cares"! It is time to say something.

As a fellow sufferer of the equally destructive fibromyalgia, this article made me cry. With money for health so short and the rapidly increasing level of the problem – who will help us? The longer our needs are disregarded and swept away by uncaring beurocrats or – WORSE – medical people who tell us that it is all in our heads or due to feminine wiles – the worse the final outcome, when millions of people world wide are unable to function at all. Thank you, Mr King, for a kindly and heartfelt plea.

Dear Mr. King, thanks for your continued support and great reporting about this debilitating illness: I am one of the 17 million worldwide for 14 years.'May 12: A Disease Gets Its Day, but Who Cares?' You Certainly Do Care For ME!

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